In So Much Pain And Scared, Getting Worse Rapidly

[energyandstruct]

Please, I really really need help. having hard time even typing this its taking long time. if you look thru my post history can see some labs and experiments i've tried. have severe cfs. it's getting worse so fast to the extent that not only can i not tolerate exercise, when i'm sitting up and still it is like exercise and causes pain/lactic acid feeling... i used to be able to at least rest with comfort

I am deterioriating so ******* rapidly and I'm very scared. was a runner in high school and have mental pain tolerance but this is too much and i am losing hope. has ray's work helped anyone with such seeer illness recover? is it hopeless?

I really need something tangible to be able to give me hope

 

[energyandstruct]

Please help

 

[energyandstruct]

i don't know what i've done to deserve this

 

[Ulysses]

Have you tried Thiamine?

Thiamine Reduces Both Lactate And Ammonia

 

[energyandstruct]

Have you tried Thiamine?

Thiamine Reduces Both Lactate And Ammonia

have tried super high dose thiamine which was only time i had effects from it. at the time I was not as bad shape and it gave energy but also caused some heart palps (maybe increased metabolism but had other nutrient deficiency?) will try thiamine at more medium doses, this is good thought thanks friend

they do use it to treat lactic acidosis it's true . maybe doctor would even give it iv

 

[energyandstruct]

this is just such a huge problem and nobody here really owes me help of course. i've emailed danny roddy frequently but it seems he defaults to certain standard responses, he's not necessarily wrong.

maybe vit d plays a big part, i haven't been outside in sun for awhile, although i have red light on

I was low in vitamin D last summer and i certainly haven't gotten much sun since then

bag breathing helps with the pain some

 

[Vinero]

Have you tried antibiotics? Maybe you have got a bacterial infection going on somewhere. Endotoxin overproduction can cause the lactic acid metabolism. Try some doxycycline or other antibiotic and see if you feel better.

 

[Terma]

In this situation I would seriously just consider some cannabis as a temporary measure.

Separately you might get some help from high-dose Alpha-Lipoic Acid combined with high-dose COQ10 and making sure your blood glucose doesn't drop too much - this is actually best improved by low doses of fructose during the day combined with low doses of choline [with meals] and [high dose of] TUDCA to ensure liver function. These are all recommendations from patient n=1 over a few forums, and if you take all at once (in sufficient doses) odds are good you get some relief. The only issue is cost, cannabis might be cheaper and more quickly available.

These are not cures or long-term solutions rather the opposite.

 

[energyandstruct]

Have you tried antibiotics? Maybe you have got a bacterial infection going on somewhere. Endotoxin overproduction can cause the lactic acid metabolism. Try some doxycycline or other antibiotic and see if you feel better.

was on minocycline for awhile from doctor and plaquenil but they didn't seem to help
it was lyme that triggered everything, a very straightforward case of lyme with classic rash, fever, etc... that was treated. but idk if there are still bacteria, abx didnt help, antivirals didn't help

 

[energyandstruct]

the only labs that have shown stuff that's very weird are immune labs and IgE and eosinophils, --stuff related to histamine

some viral counts high too

thyroid normal but i might try it anyway cause blood tests can be inadequate?

 

[energyandstruct]

In this situation

I would seriously just consider some cannabis as a temporary measure.

Separately you might get some help from high-dose Alpha-Lipoic Acid combined with high-dose COQ10 and making sure your blood glucose doesn't drop too much - this is actually best improved by low doses of fructose during the day combined with low doses of choline and TUDCA to ensure liver function. These are all recommendations from patient n=1 over a few forums, and if you take all at once (in sufficient doses) odds are good you get some relief. The only issue is cost, cannabis might be cheaper and more quickly available.

These are not cures or long-term solutions rather the opposite.

weed has made my fatigue/mental state worse often, i may try cbd again tho. trying short term things to cope is good idea mybe when this bad. instead of biting down on stick or swearing lol. maybe kratom. kratom always ***** up my sleep and hormones since being sick but short term pain relief from it is heavenly

I do have cannabis and even prerolled a terrible joint lol so i guess i could try that if i can't find anything peaty to work

how high dose have u dosed coq10, has it helped? I have lots

i have a ton of supplements actually, that cfs doctor recommended but she didn't tell me how to take them or which ones were for which and i'm lying in bed just deterioriating, should havve a nurse helping lol

everything from glycine to citrulline, to lots of haidut's supplements

not much has worked recently

mb cannabis will help w sleep? i dont like the idea but i need to slep thru pain and this crisis

 

[Terma]

Yeah, "weed" is not ideal, depending on the source it may contain zero CBD at all, and worse case contains other crap. It's just quickly available and both THC and CBD are potent across a wide range of states, good and bad.

Both probably affect the circadian rhythm but I didn't research this and I suspect some of the research is not fully done yet.

CoQ10 personally was most effective as high dose Ubiquinol supplement (at least 300mg but easily 500mg or more, which translates to about double regular CoQ10). But I won't buy that again, too costly. I haven't tried this, but: next thing I am going to try for my health is very high dose CoQ10 (1200mg/day) powder dissolved into coconut oil, which is the recommendation bulksupplements writes on their own page. That dosage (minimum 600-1200mg/day) is actually backed somewhere for ME/CFS but don't ask me to link it right now. But in fact TUDCA (1000-1500mg/day or so) was more effective, and over the longer term, using fructose and choline judiciously was better. Keep in mind many sources of fructose are bad, even orange juice can work for or against you due to its other substances.

Glycine and some other recommendations here have had terrible effects in some ME/CFS patients, I wouldn't do more than 1g at once. It can increase ammonia, lower blood glucose, and (especially) free glycine probably has unknown effects on the microbiome as well as on absorption of over substances you consume with it. Meanwhile gelatin has arginine and glutamate which can work against people, or possibly other things in the gelatin itself.

 

[Terma]

Keep in mind the important thing is not to try these individually. Try ALA and CoQ10, both high-dose, combined, making sure blood glucose doesn't drop too much (even go so far as to buy a meter if you have the money). I would even add TUDCA, it's pretty great except for the supplement quality, see other threads. Fructose plus choline is sort of a separate thing but essential to keep the blood glucose, so you end up needing all of this at once. Most ME/CFS try things individually and then give up on them.

 

[lampofred]

Have you tried high-dose aspirin? The uncoupling effect might give a temporary boost in energy and mental clarity. Just take it along with Vit K. And I think the acidic effect of aspirin might be useful for combating alkalosis-based issues like CFS/fibromyalgia/etc.

 

[energyandstruct]

Have you tried high-dose aspirin? The uncoupling effect might give a temporary boost in energy and mental clarity. Just take it along with Vit K.

i usually take around 600 mg daily, with some k... haven't had bruising yet, how much can u take without bruising, if u take it with k? seems tricky.. i get IVs a lot tho so the no bruising so far seems like good sign, i would've seen it

 

[Ulysses]

Favorite aspirin: https://www.amazon.com/Geri-Care-Bottled-Aspirin-100-bottle/dp/B0006GE5EU

 

[Terma]

I wrote "high-dose" CoQ10 as being 1200mg/day, but in fact I will try up to 1800mg/day of powder in coconut oil, sporadically (that's another complication, I always cycle things...). In part because of unknown degree of absorption from the powdered supps.

 

[Terma]

CoQ10 also seems pretty harmless. The only concern I ever heard brought up about it was from Jaminet who thought it might feed bacteria, but he has a very high concern on that topic compared to everyone else.

 

[Terma]

Aspirin ****88 me over more times than it helped, so I'd say it's highly n=1.

 

[Terma]

Depending on whether or how much POTS you have (since so often cormorbid) you could temporarily benefit from beta-blockers or Gabapentinoids like Lyrica or Phenibut.